Five year outcomes for users of mental health rehabilitation services: a retrospective cohort study Panagiotis Zis, Academic Core Trainee in Psychiatry1,2 Helen Killaspy, Reader in Rehabilitation Psychiatry1,2 Word count 1200 1Department of Mental Health Sciences, University College London, Charles Bell House, 67-73 Riding House Street, London W1W 7EJ 2Camden and Islington NHS Foundation Trust, St Pancras Hospital, 4 St Pancras Way, London, NW1 OPE 1 Summary Five year outcomes for mental health rehabilitation service users surveyed in 2005 were investigated retrospectively through case note review. Two thirds had a positive outcome, defined for those who were inpatients in 2005 as achieving and sustaining community discharge, and for those who were community patients in 2005 as sustaining the community placement/moving to a less supported facility. Overall, 40% progressed to more independent settings and 9% achieved independent living. Reported medication nonadherence increased the odds of not progressing (OR 8.60, 95% CI 3.4121.70). Interventions to improve medication adherence are required. 2 Introduction Mental health rehabilitation aims to promote autonomy for people with longer term and complex problems1. UK rehabilitation services developed during the deinstitutionalisation era and have evolved to incorporate a whole system approach to facilitate successful community living for this group 2. While long term studies of those discharged from asylums found positive outcomes for most3, there have been no studies investigating outcomes for users of contemporary mental health rehabilitation services. We aimed to investigate five year outcomes for users of one service and identify associated factors. Method Sample In 2005, all 141 users of an inner city mental health rehabilitation service were surveyed4 using standardised assessments of social functioning5, substance use6, challenging behaviours7 and needs8. Approval was gained from the local Research Ethics Committee to review this cohort’s case notes for the purposes of this study. Data Outcome data were collected for the five years from the date each individual was surveyed (April to August 2005). Any deaths, discharges or loss of contact with services were noted and any recorded episodes of medication non-adherence. Positive outcome was defined as follows: for those who were inpatients at the time of the original survey, being discharged to the community and maintaining the placement or moving to a less supported placement, with no subsequent readmissions or placement breakdowns; for those who were community patients at the time of the original survey, maintaining the same community placement, or moving to a placement with the same level of support, or moving to a less supported placement, with no placement breakdowns or hospital admissions. Additional data were collected on factors potentially associated with outcome (education history, family history of mental illness, history of childhood separation or abuse, medical history, medication prescribed in 2005). 3 Analysis Data were analysed using the statistical software package SPSS (v 14.0). Descriptive statistics were examined (table 1) and univariate comparisons made between patients who had positive and negative outcomes (table 2). Where statistically significant differences were found and full data were available, variables were included in a logistic regression model to identify factors associated with outcome. Since community patients only had to maintain their placement to be classified as having a positive outcome whereas inpatients had to progress to discharge, the regression was repeated assigning a positive outcome to community patients only if they moved to and sustained a less supported placement during the five years. Results Case notes were available for 140 patients, of whom 17 (12%) had died (all from natural causes) and were excluded from the analysis. Of the remaining 123, two had been discharged from services and were categorized as having a positive outcome. One third (42/123, 36%) were inpatients in 2005. Five years later, 82 (67%) had a positive outcome. Of these, 27 (33%) had been inpatients in 2005, 23 (28%) were community patients who successfully moved to a less supported setting, and 32 (26%) maintained the same community placement or one with similar support. The first regression analysis therefore compared 82 patients with a positive outcome and 41 with a negative outcome. The second regression compared 50 patients with a positive outcome and 73 with a negative outcome. Over the five years, 11 patients (9%) achieved independent living. Demographic data, diagnosis and psychiatric history were reported previously4. The mean age was 44 years, 83 (68%) were male and 96 (78%) had never married or cohabited. The majority (114, 93%) had a diagnosis of schizophrenia or schizoaffective disorder. The mean length of illness was 22 years (SD 12). 4 Those with a positive outcome were older than those with a negative outcome (mean age 46.78 vs 38.90 years, mean diff. 7.88, 95% CI 3.13 to 12.63, p=0.001), had a longer history of mental illness (23.95 vs 17.27 years, mean diff. 6.68, 95% CI 2.17 to 11.19, p=0.004), had lower scores on the social function communication sub-scale5 score in 2005 (18.73 vs 20.37, mean diff. 1.63, 95% CI -2.78 to -0.48, p= 0.006) and lower scores on the challenging behavior sub-scale C7 in 2005 (0.17 vs 0.34, mean diff. -0.17, 95% CI -0.33 to -0.01, p=0.033) which assesses non-adherence with medication, absconding and substance misuse. Those with a negative outcome were more likely to have a history of physical abuse in childhood than those with a positive outcome (8/41 [19%] vs. 6/82 [7%], 2 = 4.03, df 1, p=0.045), to have been involuntarily detained in 2005 (9/41 [22%] vs. 6/82 [7%], 2 = 5.47, df 1, p=0.019), and to have had at least one period of non-adherence with medication recorded in the case file between 2005 and 2010 (38/41 [93%] vs. 30/52 [58%], 2 = 34.79, df 1, p<0.001). These factors were entered into the first logistic regression model as independent variables with the binary outcome as the dependent variable. Although the full model significantly predicted outcome (2 = 61.97, df = 7, p<0.001), the variance (39 to 55%) was explained by two variables; age and medication non-adherence. Each increased year of age was associated with a decrease in the odds of a negative outcome by a factor of 0.93 (95% CI 0.89 - 0.98). Having any recorded episodes of medication non-adherence between 2005 and 2010 was associated with a 32.42 fold increase in the odds of a negative outcome (95% CI 7.56 -138.92). However, when the stricter definition of outcome was applied in the second regression model, the only factor that remained statistically significant was having any recorded episode of medication non-adherence. This was associated with an increase in the odds of a negative outcome by a factor of 8.60 (95% CI 3.41 to 21.70). See Table 3. 5 Discussion The majority of mental health rehabilitation service users in this study had a positive outcome, with around two thirds achieving and/or sustaining community placement over five years. However, despite good local provision of a range of supported accommodation4, only 40% actually progressed to a less supported community setting and less than 10% achieved fully independent living, highlighting the importance of holding a “long term view” for this group2. We found that non-adherence with medication influenced outcome. Our results should be interpreted with some caution given the limitations of our design. Since retrospective studies are susceptible to recall bias, we attempted to minimise this through the use of case note data and data from standardised measures used in the original survey. Nevertheless, staff may have been more likely to record medication non-adherence if a patient was relapsing, thus we may have over estimated the importance of this factor. However, this finding is corroborated by other outcome studies of people with psychosis9,10. We avoided bias from missing data by only including variables in our regression analysis where data were available on the whole cohort. This may have meant that other important variables were excluded. Finally, our cohort comprised users of one service, and results may not be generalisable to other settings. Many supported accommodation facilities are not funded to administer medication and require service users to self-medicate11. Our findings suggest that better outcomes could be achieved through a greater focus on this area. Increased support and interventions that improve insight may be helpful12. Evaluations of more controversial approaches such as incentivisation 13 and the use of Community Treatment Orders14 will be of interest in this debate. 6 Author Contribution Dr Killaspy conceived and designed the study. Dr Zis collected and analysed the data. Both authors were involved in the drafting and revision of the article and approved the final version. Acknowledgements We would like to thank Sarah White for her helpful advice regarding data analysis and Professor Michael King for commenting on this manuscript. Declaration of Interest None 7 Table 1. Demographics, diagnosis and history Total Progressed Stable Relapsed Mean (SD) age in years N=123 (100) 44 (13) N=50 (41) 44 (14) N=32 (26) 51 (11) N=41 (33) 39 (12) Male (%) 83 (68) 31 (62) 21 (66) 31 (76) 70 (57) 12 (10) 9 (7) 7 (6) 6 (5) 19 (15) 31 (62) 3 (6) 4 (8) 3 (6) 2 (4) 7 (14) 18 (56) 2 (6) 1 (3) 1 (3) 3 (10) 7 (22) 21 (51) 7 (17) 4 (10) 3 (8) 1 (2) 5 (12) 96 (78) 4 (3) 21 (17) 2 (2) 22 (12) 38 (76) 1 (2) 10 (20) 1 (2) 21 (13) 24 (75) 2 (6) 5 (16) 1 (3) 28 (11) 34 (83) 1 (2) 6 (15) N=105 7 (4) N=44 6 (4) N=24 7 (4) N=37 7(4) 114 (93) 3 (2) 3 (2) 2 (2) 1 (1) 0 (0) 47 (94) 1 (2) 1 (2) 1 (2) 0 (0) 0 (0) 31 (97) 0 (0) 1 (3) 0 (0) 0 (0) 0 (0) 36 (89) 2 (5) 1 (2) 1 (2) 1 (2) 0 (0) 101 (82) 6 (5) 7 (6) 1 (1) 3 (2) 1 (1) 4 (3) 3 (4) 40 (80) 1 (2) 4 (8) 0 (0) 2 (4) 0 (0) 3 (6) 3 (5) 28 (88) 1 (3) 1 (3) 0 (0) 0 (0) 1 (3) 1 (3) 5 (5) 33 (81) 4 (10) 2 (5) 1 (2) 1 (2) 0 (0) 0 (0) 2 (3) Ethnic group (%) White Black Caribbean Black African Black other Asian Other Marital status (%) Never married Married/living as married Divorced/separated Unknown Mean (SD) years contact with psychiatric services Mean (SD) previous admissions Diagnosis (%) Schizophrenia /sczaffective Bipolar affective disorder Depression Personality disorder Asperger’s syndrome Other Secondary diagnosis (%) No other diagnosis Substance misuse Learning disability Organic brain injury Personality disorder Schizophrenia Anxiety/depression/OCD Mean (SD) years in placement (2005) 17 (10) 8 Table 2. Independent Factors Predicting Outcome Positive N=82 (67%) Negative N=41 (33%) P values 46.78 (12.99) 38.90 (11.59) p=0.001 Age at 1st contact with the 22.76 (9.42) services (n=112) 22.02 (6.77) p=0.661 Age at 1st admission to rehabilitation services (n=103) Difference in years (n=100) 38.94 (12.84) 33.56 (10.44) p=0.03 17.09 (12.25) 11.17 (11.07) p=0.026 Difference in years between 1st contact and 1st rehab admission (n=100) 17.09 (12.25) 11.17 (7.77) p=0.026 Length of mental health history in years (until 2005) Number of Admissions before rehabiliation (n=86) Total Number of Admissions 23.95 (12.58) 17.27 (10.44) p=0.004 5.00 (3.31) 5.53 (3.75) p=0.493 6.24 (3.51) 7.64 (4.42) p=0.081 Family Hx of mental ilness Yes 25 No 57 Yes 18 No 23 p=0.141 Medical Hx Yes 35 No 47 Yes 20 No 21 p=0.521 History of Separation in Childhood (n=72) Yes 16 No 29 Yes 11 No 16 p=0.458 History of Sexual Abuse Yes 5 No 77 Yes 2 No 39 p=0.783 Yes 6 No 76 Yes 8 No 33 p=0.045 Age (in 2005) History of Physical Abuse 9 Months in placement (until 2005) LSP self care score 53.30 (56.73) 31.46 (40.31) p=0.068 27.90 (6.17) 28.80 (6.70) p=0.459 LSP social contact score 14.82 (3.80) 14.83 (4.35) p=0.987 LSP Non-turbulance score 40.74 (5.15) 40.80 (6.66) p=0.501 LSP Responsibility Score 16.29 (3.08) 15.93 (2.82) p=0.524 LSP Communication Score LSP Total score 18.73 (3.32) 20.37 (2.35) p=0.006 118.49 (15.30) 120.73 (15.96) p=0.451 Total number of met needs 6.82 (3.51) 5.95 (3.67) p=0.206 Total number of unmet needs 1.43 (2.45) 2.05 (2.65) p=0.296 Total number of needs 8.24 (3.46) 8.00 (3.96) p=0.726 Cads alcohol score 1.40 (0.61) 1.59 (0.74) p=0.182 Cads drug score 1.20 (0.62) 1.39 (0.89) p=0.242 SPRS A score 0.35 (0.67) 0.32 (0.79) p=0.341 SPRS B score 0.48 (1.19) 0.39 (0.95) p=0.684 SPRS C score 0.34 (0.84) 0.66 (1.20) p=0.047 10 SPRS D score 0.16 (0.53) 0.15 (0.57) p=0.825 SPRS Total score 1.33 (2.44) 1.51 (1.99) p=0.346 Yes 16 No 45 Yes 10 No 26 p=0.868 Yes 17 No 44 Yes 14 No 44 Yes No Yes No 5 31 12 24 p=0.112 Being on Antidepressants Yes 23 (in 2005) No 37 (n=95) Being on Anticholinergics Yes 26 (in 2005) No 33 (n=94) Reports of non-adherence (since 2005) Yes 30 No 52 Yes 4 No 31 p=0.005 Yes 8 No 27 p=0.039 Being under Section MHA (in 2005) Yes 9 No 32 Being on Depot Antipsychotics (in 2005) (n=97) Being on more than 1 Antipsychotics (in 2005) (n=97) Being on a Mood Stabilizer (n=96) Yes 6 No 76 p=0.487 p<0.001 Yes 38 No 3 p=0.019 11 Table 3. Characteristics of patients investigated for their association with outcome Variable Age in 2005 (per year older) OR 0.970 95% CI 0.922 to 1.021 p-value 0.248 Length of illness in 2005 (per year) 1.035 0.982 to 1.092 0.203 Any non-adherence with medication 2005-2010 8.596 3.405 to 21.700 <0.001 SPRS C Score in 2005 1.174 0.416 to 3.313 0.669 LSP Communication Score in 2005 0.908 0.584 to 1.413 0.179 Detained involuntarily in 2005 0.336 0.074 to 1.532 0.159 History of physical abuse in childhood 2.004 0.523 to 7.680 0.311 SPRS7 = Special Problems Rating Scale, a measure of challenging behaviours LSP5 = Life Skills Profile, a measure of social functioning 12 References 1. Anthony W. Cohen M. Farkas M, et al. Psychiatric Rehabilitation. 2nd ed. Boston: Center for Psychiatric Rehabilitation, Boston University; 2002. 2. Wolfson, P., Holloway, F., Killaspy, H. (eds). Enabling Recovery for People with Complex Mental Health Needs: A Template for Rehabilitation Services. 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